What it is:

Over the past 3 years, CureTogether has gathered millions of patient-reported data points on symptoms and treatments for over 500 conditions. Now it’s time to test on a larger scale how well CureTogether data represents the general population. Do they match up or not?

So we’re running a contest to tap the most brilliant stats minds out there. Challenge our dataset! See whether or not it holds up to existing research studies. Why? You’ll be helping to demonstrate the effectiveness of online platforms for medical discovery, and ultimately helping to reduce global suffering.

NOTE! The goal of the competition is not to reach any predetermined conclusion. It is to measure as well as we can how much our conclusions agree or disagree with the PubMed literature. Whether you find agreement or disagreement or something in between will have no effect on your chances of winning.

(There’s also a cash prize. And we’ll help you get your findings published. And if you REALLY impress us, we just might have you come work with us! For real.)

.How it works:

- Pick one or more of CureTogether’s top conditions
- Find one or many discoveries on PubMed or GoPubMed to compare to CureTogether data
- Ask Alexandra (CureTogether co-founder) for the anonymized data
- Prepare analyses and/or visualizations that demonstrate and quantify how well CureTogether data matches up with the independent studies (use R, Python, SQL, SAS, SPSS, Excel, Sweave, or your favorite tool)
- Send Alexandra what you find
- Win $3,000 top prize, $1,000 second prize, or one of four $250 third prizes
- Get recognition on CureTogether’s Team page, blog, Twitter account, etc.

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Criteria/Scoring:

- 25% – Does the entry powerfully or extensively quantify the extent to which CureTogether data matches up with independent studies? Finding a discrepancy is as interesting as finding a confirmation.

- 25% – Is there a clear demonstration of method and results? How did you analyze CureTogether data, and how did you do the meta-analysis to compare it with the other studies?

- 25% – Is there a plausible, testable hypothesis that seeks to explain any similarities or differences between our data and other datasets studied?
- 25% – Does the entry compare CureTogether data with several high quality independent studies with large sample sizes, studies that have been replicated multiple times, more recent studies, etc?

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Eligibility:

- Must be 18 years of age or older

- Open to individuals, organizations, or teams in any country around the world (if a team wins, prize money will be equally distributed)

- Signed data access agreement to protect patient privacy and use of their data
- Signed release for CureTogether to post the findings publicly

Timeline (2011):

- Intent to participate cut-off (data requests sent in) – July 29
- First draft of discoveries submitted for feedback by – August 29
- Final discoveries submitted by – October 29
- Winner(s) announced – November 15

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Get started now! Tell Alexandra you’re interested in joining the contest here.

The Amgen Foundation is supporting the Patients| Choices| Empowerment competition with Ashoka’s Changemakers to answer the question of how we can elevate patients’ voices to improve health outcomes globally.

Submit your solutions, or nominate a project, in this challenge that empowers patients to make decisions with confidence and clarity, in concert with people who care and can help.

If you’re interested in living a longer, healthier life, here’s your chance to learn about the latest research, meet other enthusiasts, and save money too.

Christine Peterson is hosting the first Personalized Life Extension Conference, October 9-10 at the San Francisco Airport Marriott. She is offering a $100 discount on the $275 registration price to all CureTogether members who register with the discount code “CureTogether”.

From the conference website:

“Topics to be covered in lectures, Q&A, and during meals and breaks include:

DNA testing: Costs are coming down fast. We can’t re-write our DNA (yet), but there is much that can be done to “turn on” and “turn off” genes related to individual risks.

Telomere protection: Getting your telomeres measured, and techniques to protect them, from inexpensive to very expensive. TA-65 is the latter; we’ll debate value and cost.

Finding a life extension doctor: Very few physicians are informed or even interested in anti-aging techniques. Let’s explore how to find the ones who are.

Blood testing: If you’re young and healthy, get extensive blood work done now to get a baseline. If older, see where you’re too low or too high and take corrective action — the “normal” range accepted by the average doctor is almost certainly too broad.

Calorie restriction and intermittent fasting: It’s pretty clear these can delay the diseases of aging. We’ll hear how hard or easy they are to carry out in real life. “Mimics” of calorie restriction: We’ll consider whether any of these are ready for prime time. Inflammation: Increasingly seen as central to the aging process, we’ll look at ways to measure and reduce this damaging process throughout the body, from taking aspirin and anti-inflammatory supplements to reducing abdominal fat and increasing dietary fiber. C-reactive protein (CRP) monitoring can track progress.

Sleep: Quantity and quality of sleep is increasingly being recognized as critically important; we’ll look at the factors governing these and how to control them.

Stress reduction: Perhaps the most important single factor to tackle, due to its connection to blood pressure and cortisol, and yet a challenge to reduce given today’s lifestyles. Many approaches can help –yoga, humor, meditation, sex, massage, vacations, moderate exercise, downsizing, simplifying, reducing email frequency, and getting off the computer one day a week.

Self-experimentation: Many longevity techniques involve changing a parameter and tracking its effects. We’ll look at designing such experiments, learning from the Quantified Self experience.

Exercise: What types, what’s the minimum, and (just as important) the maximum from a longevity perspective, since overtraining can cause overly high cortisol levels.

Eating: A complex, controversial, and centrally important topic for longevity — advice to take (not the USDA), macronutrients, micronutrients, organic vs. standard, raw vs. cooked, probiotics, what types of processing to avoid, specific “foods” to avoid including high-fructose corn syrup and partially hydrogenated oils, techniques for weight control and reduction, how to reduce the time required. Specific foods to consider: curcumin, turmeric, cinnamon, green tea, black tea, berries, dark chocolate, and stevia to replace sugar.

Mood: Optimistic people live longer, it’s claimed. We’ll look at mood-influencing supplements, techniques, and actions, from SAMe, rhodiola and Prozac to the pursuit of love and intimacy: married people and those in monogamous long-term relationships are said to live longer.

Enhancement and brain function: To figure out how to live longer, it would help to be smarter. Some of us have tried mental “enhancers” such as Provigil or Ritalin; let’s compare benefits and risks. We’ll look at supplements thought to preserve brain function, such as galantamine.

Standards of information quality: Large double-blind studies are not available for many longevity questions, and may never be due to high costs and inability to patent existing nutrients and practices. Yet health claims must still be evaluated, using less-ideal data.

Common errors: A common mistake in life extension news items is mistaking correlation for causation. Let’s examine how to guard against this and related confusions, rampant in media reports and even in some medical studies.”

INSTITUTE FOR THE FUTURE ANNOUNCES BODYSHOCK:
CALL FOR ENTRIES ON IDEAS TO TRANSFORM LIFESTYLES AND THE HUMAN BODY TO IMPROVE HEALTH IN THE NEXT DECADE

“What can YOU envision to improve and reinvent health and well-being for the future?” Anyone can enter, anyone can vote, anyone can change the future of global health.

With obesity, diabetes, and chronic disease rampaging populations around the world, Institute for the Future (IFTF) is turning up the volume on global well-being. Launching today, IFTF’s BodyShock is the first annual competition with an urgent challenge to recruit crowdsourced designs and solutions for better health–to remake the future by rebooting the present.

The US Department of Health and Human Services (HHS) and the Institute of Medicine (IOM) are working on a major event around innovation and health data for which there will be a public launch on June 2nd with remarks from Secretary Sebelius, HHS CTO Todd Park and White House CTO Aneesh Chopra. HHS and IOM have never done an event like this before. There will be major tech companies doing public launches of their work using HHS data.

The first step in building your decision tree.

I’m going to my first book launch party tomorrow. I’m a bit nervous.

It’s for Thomas Goetz’s book The Decision Tree, which was just released. His book and blog carry great insight into the future of health – personalization, quantification, and smarter choices. He even created a nifty app on Wired’s website where you can build your own decision tree.

Why am I nervous? Well, the book includes my own personal decision tree (see below), based on my 10-year battle with chronic pain. So now everyone who reads it will know my story. Which is scary but also fantastic, because I think hearing people’s stories is such an important part of healing ourselves that is often missing in traditional doctor-patient healthcare.

Kudos to Thomas for putting personal, informed, patient choice at the forefront of health. I’m glad he wrote the book, and I encourage you to read it!

I spent last week in San Diego for TEDMED, the medical version of the TED conference. It was an incredible experience for me, almost overwhelming at times with the quality and number of amazing people there.

Here are my top 10 takeaways:.

1. Disability to Super-Ability – Mullins, Kamen, Angle

Three incredible stories, told back to back, left the audience in tears and on the edge of their seats.

Prosthetically augmented athlete Aimee Mullins gave a moving account of how being “disabled” has affected her life in a positive way. She reframed our thinking: “Adversity isn’t an obstacle to get around, it’s part of our life. We adapt.”

Dean Kamen spoke of his passion to build prosthetics for war veterans that are ultimately better than real limbs, imparting super-ability to the wearers.

iRobot co-founder Colin Angle continued the story of augmented reality by demonstrating how robots will become caregivers for elders like his mother. “In 2030, every person under 65 will be responsible for the care of a person over 65,” Colin said. “Can robots help with this?”

Saving lives, restoring functional living: these are inspiring applications of robotics and engineering. I highly recommend watching these three TEDMED talks when they are released.